July: Coming to terms

“July” is coming to terms with the reality of care-giving, for everyone. You’re just trying to sort out what works and what doesn’t – trying to find routines which will be comfortable and comforting. In some ways, it is the longest “month” – a period when the changes brought about by dementia are fairly small from day to day. This stability can be misleading, though – the changes may be small from day to day, and your routines can be adjusted to accommodate them without real effort – but they add up.

When you are at this point, you’re deeply invested in being a care-provider. You start to identify and define yourself by this role. You have been through the stage of doubting whether you can do what needs to be done, and you gain solid confidence that you and you alone understand what is really happening. You know all about the meds, all about doctors, all about the needs of your loved one for whom you are caring. You have gotten used to the responsibilities involved, and will likely resent it if anyone tries to interfere or impinge. After all, you’re the one doing the care-providing – you’re the one there, on the scene, with the most information and experience. Friends and family members will turn to you for news and decisions. This is the reality you are in, and you come to accept it. This is how it is.

Before one brief vacation when Martha Jr and I were going to be gone we prepared a “Mom Operating Manual” for her sister – a complete itemized run-down of all the usual routines and procedures that Martha Sr was used to. About a year later we were going to be gone again for a few days, and thought that we should check the manual to see if anything needed to be changed – and almost everything in there was completely out of date. Things had evolved slowly enough that we had lost track of how much change there had been.

This was educational for another reason – if all those routines in caring for Martha Sr had changed, how had we changed in response? As John says, both of us relied a great deal on being able to write and work through emotions as our own personal and cathartic coping mechanisms. We needed that time, that outlet. But when things with our patient were disrupted, we lost that opportunity. Both of us expressed, at one point or another, that this was “Frustrating, particularly in that it disrupts my ability to think and write further, meaning some of the stuff I wanted to get done today.” Losing that helped contribute to a slow spiral down for us, as well as our respective mothers-in-law.